Sunday, December 30, 2018

Christmas Letter 2018


Merry Christmas 2018 and a Happy New Year!





Photo Credit: Vicky Falk

(More pics to come at some point)

2018 has been an up and down year marked by gratitude for health, growth and celebration.  This year our family has seen movement from the chaos of the last 3 years (ever since the twins were born) towards finding our new rhythm with the ever-changing variable of the kids growing up!  Ryan and I are enjoying celebrating life whenever possible and catching glimpses of our favorite parts from our “old normal” (pre-twins, pre-cancer) in the movement towards our “new normal”.  There is still much uncertainty in our lives.  However, amidst this uncertainty this is certain: our family chooses to be optimistic, hopeful, believing, fun-loving, celebratory, and above we choose to place our trust in Jesus, the very One we celebrate this Christmas season.

The growth in Garrett and Allison from being 2 year olds to becoming 3 year olds has been delightful.  In April our nanny moved on to a new job and our twins transitioned to daycare 4 days a week --- which slowly, but surely has become wonderful for them. (This allows adequate rest for me and also one-on-one time with Rayna after school.)  Not only are the twins now potty-trained (potty training 2 x two-and-a-half year olds is NOT for the faint of heart!) and dressing themselves for the most part, their personalities are emerging with stamina to enjoy outings and activities.  While Allison loves princesses and proclaims her “Elsa power” Garrett is a fan of anything sports.  Both played soccer this fall; but Garrett is showing a keen interest and aptitude for all things sport-related.  Furthermore, at the beginning of the year fighting vs. playing nicely together was about 50/50.  At the end of the year it is heart-warming and oh so cute to listen to them chatter and natter with and at each other and mostly play so wonderfully together.  And having two 3 year olds in the house anticipating Christmas is the sweetest: pretty gift wrapped presents being arranged and rearranged by little hands, Christmas songs being sung non-stop by little voices, seeing Santa and talking about Santa and the goofy grin this brings to Garrett’s little face (and hearing Garrett defend the existence of Santa when his big sister declares that Santa is not real), and the unsureness of the exact countdown for Christmas but the complete sureness of something really spectacular on the horizon bringing much excitement to these two little cuties.  Each day we are living out sweet and treasured memories. 

Rayna is now in grade 1.  She worked very hard this fall to master the monkey bars and was so sad when it got too wet and cold to play on them.  Furthermore, she also played soccer for the first time this fall and it delighted my soccer-loving heart to see her enjoy it so much.  Though her 6 going on 16 attitude can be strong at times, she is the kindest, most encouraging, and creative girl.  She warms our family’s hearts by making cards for us and wrapping “presents” for us – just because and on special occasions.  She’s been secretly working on a Christmas card for Ryan and I for a couple of weeks, and now that her writing is really starting to take off these very sweet gifts are all that more precious.   

Ryan’s local Chilliwack Blind Factory is steadily picking up pace and, along with the Saskatoon Blind Factory, is keeping him busy.  He plays pickleball whenever possible, which with work and family demands has been much less than he would like.  It’s still ‘the best thing ever’ to him (he’s been bugging me to start playing and maybe, just maybe, 2019 ought to be the year I try it out?).  Since fall Ryan has also started participating in music at church.  This is finally feasible for our family and has been very life-giving for him.  He hopes to press into more music involvement as much as our family demands allow.

At the beginning of the month I received another clear MRI report and the oncologist bumped up my scan interval from every 3 months to every 4 months.  This is very good news!  We are still trying to process and sort out what this means for pressing into the future (see blog post about Brain Injury Awareness); but joyfully embrace each clear scan.    I fill my days taking Rayna to and from school, helping with daycare drop offs and pick-ups, I re-learned how to cook (at least that’s what it felt like!), household task, resting, running 3 days/week, writing and I played soccer this fall (yay!).  I also volunteer once a month for my church visiting the “shut-in” elderly and will be increasing my involvement in this role in the new year.          

Our family likes to have fun.  I feel we have excelled at celebrating the “small stuff” this year: Valentines Day, Easter, summer, fall, Halloween and BIRTHDAYS!!!!  Though such things are now quite exhausting for me, my heart was bursting planning and hosting Rayna’s 6 year old birthday party in March and a (smaller) party for the twins’ 3 year old in October!  We’ve also enjoyed nature and hikes and the tulip festival (well maybe Ryan didn’t really enjoy that one, but the rest of us sure did ;) going to Hells Gate, the Othello Tunnels and, ****our family hiked Lindeman this fall!!!!!****  (for you non-locals, this is a not so easy, beautiful, rock-scrambling, local hike) This was a major accomplishment and symbolic of adventures the future could hold for our family. These are on-top of another epic summer road trip vacation (see Summer Vacation blog post for further details) visiting Kelowna (Ryan’s pickleball tournament, kangaroo farm, beach), Camp Oshkidee (so amazing, as always!), Saskatoon, Swift Current (Ryan had flew back home to work while I took the kids to my parents’) West Edmonton Mall.  Along the journey we connected with so many precious friends and family members.

Ryan and I also did a daytrip to Manning Park to cross country ski in Jan. Ryan enjoyed a “guys trip” to Phoenix in Spring which was much needed and deserved.  I enjoyed (at least the parts where the stomach flu wasn’t striking) a girls trip to Whistler in June.  And Ryan and I celebrated a couple nights away in October to the Sunshine Coast.  In Nov. I took Rayna to Okotoks to celebrate my sister’s 40th birthday a low-key lovely time together punctuated by a super-fun surprise birthday party my brother in law threw for her!   Dec. found Ryan and Rayna going on an in-promptu trip to Maui (they got 2 buddy passes to be used in a 2 week time-frame, so obviously they had to go, right?!)

Phew! What a good year!  And that’s not even mentioning the visits from my parents, my sister and niece, our friends Brad and Ashley, local fun at Cultus lake waterslides, rides, the beach and splashing in the river! 

Wowee!  Isn’t life such a gift!  We celebrate gifts at Christmas.  Our family chooses to celebrate the gift of Jesus at Christmas.  What a gift He is.  It is by trusting Him that our family has been able to find such Hope and thrive during these past trying years.  We thank Jesus for the gift of “more and better life than we could have ever imagined!” (John 10:10 MSG, loosely quoted)  My Hope and prayer is that 2019 will be another year of “more and better life” for our family as well as yours.

Love and blessings,

Ryan and Cheryl
Rayna, Garrett, and Allison.





Here comes Heaven


After the twins were born my body felt battered.  It was difficult for my body to house those babes for 8.5 months then birth them.  After their birth we received many joyous congratulations!  Twins!  How wonderful and special and lovely and “aww I always wanted twins how lucky you are”…  I smiled politely at these dotings and Ryan cringed at them, thanking those who spoke honestly to the incredible difficulty it must be to parent twins.  I wonder how Mary felt after Jesus was born?  The wonder of it all painted with realities that weren’t so warm and fuzzy….forced to flee her homeland to protect her new son who people wanted to kill.  Difficulty.  This Christmas story overlaid with difficulty.  My own journey overlaid with difficulty.  Do you relate to a difficult, challenging personal journey these days that are to be bountifully joyous?  As I put myself in Mary’s shoes and look down at my own feet I am reminded to turn my gaze upwards.  Before my twins were born I chose the verse “this is the day that the Lord has made let us rejoice and be glad in it.” (1)  Like Mary chose to treasure the moments surrounding Jesus’ birth and think about them often, so too I shall choose to treasure these moments in my heart and think about God’s hand in them, often.  I choose to declare this is the day that the Lord has made and I will rejoice in it daily, no matter the state of the day, no matter if I feel battered, no matter if the difficulty of life is particularly heavy.  I choose to trust in God who says nothing is impossible with Him.  I choose to rest IN God’s consuming Love that I may claim the angel’s proclaimation, Do not be afraid, for my own.  And what I am experiencing in the process is heaven finding its way into my life here on Earth.  And it is beautiful, marvelous, and exactly what I need to journey this battered body through the difficulties along the way being able to treasure up the multitude of spectacular gifts, daily rejoicing, letting fear evaporate because God is with me.  Always.

This is why I celebrate Jesus this Christmas. 



(1)  Psalm 118:24
(2)  Stongly influenced by the fantastic preaching of Scott Gaglardi, see Here Comes Heaven sermon series  http://www.firstave.org/listen/




Wednesday, December 19, 2018

Brain Injury Awareness




I am on a journey to greater self-awareness. My cancer diagnosis shook this loose as I read that some of my personality traits could be facilitating cancer growth. Furthermore, my diagnosis shoved my mortality in my face precipitating a spiritual deepening.  I am learning that (though I’ve down-played or down-right ignored them) symptoms of brain injury from brain cancer (and treatments) have changed my life.
As I learn about my personality through ennaegram, I learn that my personality feels it is limitless.  We are over-achievers.  The sting in this is that we lose a sense of what we value, what we are trying to achieve.  Furthermore we are good at reading others expectations and performing, over the top performing, to exceed those expectations. We can satisfy a wide diversity of expectations depending on who is surrounding us at any given time... At the cost of losing sight of what really matters to...US.   
Ooo it hurt to read this, surely not me?  Then as I let it sink in.... Yup me.  I'm on the journey of shaking off the expectations of others that I've been so effective and capable of achieving.  I'm on the journey of discovering what truly matter to me, what*my* passions are.  Where *I* want to spend my precious energy.
This is so pertinent because I used to have an apparent abundance of energy (I was “limitless”!).  My personality type is driven, focused, goal-attaining and high energy.
I find myself post brain injury trying to resume life in that high energy fashion (this is particularly true because my personality struggles to find personal value in simply being, value is found in doing---- and not just doing, but winning in what I do). This did not used to exhaust me (or I chose not to acknowledge the exhaustion), but trying to always win, to never fail, to be the best is exhausting.
Today is the day after the kids’ church concert, a birthday nail party for my mother-in-law, helping my daughter pack for an in promptu trip, and then a birthday celebration at a noisy restaurant.
I feel wiped, not a sleepy tired kind of wiped (and my body’s not particularly tired) but an exhaustion in my head ... I’m so tired and by now I know it's gonna a couple days to recoup.  My husband asks at time like these "did you sleep okay?". And I am learning I need to find a better way of describing what's going on for me, because yes, (as long as the kids sleep) I always sleep well.
My mom is well versed in brain injury fatigue.  My dad has had numerous brain surgeries over the past 30 years due to a benign brain tumour and for as long as I can remember, battles brain injury fatigue.  My mom has educated herself on this topic and can personally speak to the experience of what brain injury fatigue means. Growing up I too had a secondhand experience with what brain fatigue can look like: avoiding restaurants at prime times, limiting time at family gatherings, having to strategically plan my piano practicing as a kid to not disrupt Dad’s rest.  But even with these experiences and mom’s awareness of what was going on I didn’t truly understand my own brain injury fatigue until now.  And I think I've been in denial with how dramatically it is affecting me. (Remember I like to perceive myself as limitless.) People are starting to ask me if I'm going to go back to work.  And immediately I start making plans in my mind for when and how this might play out.  However, when I step back I see I have not truly been acknowledging my reality.  This means that I’ve been unable to educate my husband, my family, my close friends and my physicians about what I have been experiencing.
This tired day after overload I decide I need to educate myself on what drives my increased fatigue, to be self aware, because I absolutely cannot keep up the facade anymore.  I am not who I used to be.  This hurts, but I am confident the pain of this process will drive me deeper to my core, my God given passions, gifts and talents.  And I am confident this will strengthen my relationships and poise me to become a more loving, passionate, emotionally assessable wife, mother, daughter, friend.  So I press in.
What I read today describes so much of what I haven't been able to put to words.  I feel it is valuable to educate those I care for about what I am experiencing as I am learning my own...... limitations. 
I read a couple articles in which I saw myself so clearly.  Reading these was a relief because finally I can say “that’s me!” and have words to describe what life looks like for me.
Below I will share about my experience.  I will take much from the following 2 resources and encourage anyone interested in understanding my situation and brain injury and brain injury fatigue in more depth to read them in their entirety (they are brief and easy to read)

From these resources I was able to see that my choices allow me to manage my fatigue.  This doesn’t eliminate it, and indeed I’ve already employed many of these measures; but by naming what I’m experiencing helps me to embrace even better coping strategies.
Firstly, I am coming to see that I usually appear “normal”.  My deficits are NOT readily apparent.  I work hard to compensate for them or overcome them.  It took me awhile to realize that people didn’t realize just how tired I was, then when I did realize they didn’t know I quietly tucked that information in my back-pocket (not wanting to draw attention to my decreased abilities.)
The one resource states: “The information aims to help you, your family and friends to understand your fatigue and how it affects you….In order to cope with fatigue you must first be able to recognise it”
I read this and realized I need to become an active student and advocate of my condition; not a passive, inattentive by-stander.
“So how do you know when you are getting fatigued or fatigue is starting to build up?”
I’ve begun to learn that what I previously feared were symptoms of my cancer returning are truly symptoms of fatigue
“● losing concentration/attention” (for me--- having to work extra hard to mentally focus on what I’m doing or need to do**)
 “● eyes feeling heavy, and my eyesight not focusing properly
● head feeling ‘fuzzy’
tension Headaches
● getting irritable
● limbs feeling heavy”
It felt good to read in black and white:
“Often [fatigue] can creep up”  So I need to learn what triggers my fatigue so I’m not blindsided, so I can manage and cope with it.
In the following quote I’ve underlined the ones most pertinent to me
“Things that trigger fatigue will be different for everyone. Some examples of activities reported to be more tiring following a brain injury include: ● working at a computer ● dealing with paperwork/correspondence ● being in a busy environment such as a shopping centre concentrating on one conversation in a noisy place like a pub driving and catching public transport … it is likely that certain activities are more tiring for you; what are these?”
Its described that after a brain injury the brain filter no longer works properly leading to sensory overload.  Where a healthy-brain would strategically ignore non-important stimuli, the brain injured brain takes it all in leading to over-stimulation, also called flooding.  Another article highlights about sensory overload post- brain injury(my personal notations in parentheses).:
“If it seems like your sense of touch, taste, smell, hearing, or vision is extra sensitive or heightened after your brain injury, it’s not your imagination….
-Sounds that you barely noticed before are alarming and startle you. (**I hear small noises and see things like flickering lights more acutely --- and irritatingly--**)
-It feels like you have megaphones in your ears. (Yes! I am teaching my 6 year old not to shout or even talk loudly into my ears because I cannot handle it)
-Background sounds and stimulating environments become overwhelming. (parties are no longer enjoyable)
-Fluorescent and bright lights give you headaches. (**I don’t necessarily get headaches but they make me feel ‘squirelly’ and make it difficult to focus**)
-Large gatherings of people feel overwhelming. (ABSOLUTELY…I’ve finally gotten to the point where at least they don’t usually cause anxiety anymore)

sights and sounds that didn’t bother you before, may now trigger anxiety and the fight-or-flight response where your whole being feels threatened and out of control. It can be very taxing, physically and mentally.”

I’ve never liked busy shopping centers (does anyone?!) but now they exhaust me so I only go at quieter times of the day/week.  As for concentration on conversations in a busy place: Just last week I felt like my Dad when I was out for a small Christmas gathering with girlfriends at a restaurant.  What I mean is that being in the restaurant with a bunch of conversations in the background, trying to engage in the conversation with my girlfriends, trying to figure out what I wanted to order, was exhausting.  It saddened me that this occasion that was supposed to be celebratory felt so draining.  But interestingly (happily) I realized that as the restaurant started to quiet down my energy level increased and I could enjoy myself.  Trying to have a conversation with so many other stimuli around was an (exhausting) mental battle.  If its too loud or chaotic my head simply spins.  If it’s a touch loud and not too chaotic and I’m well rested then I can enjoy the celebration but know that the following day I’ll be tired.  I realize now that I need to decide how valuable such an outing is- because it’s an energy zapper.  (I kinda feel like a hearing-impaired 80 year old in this capacity…my definition of a good celebration has markedly changed!)  It was on my 36th birthday (a year ago) that I wanted to have a big bash to celebrate my survivorship and birthday.  So we had a bunch of people over like we used to do before we had kids.  After that party I realized that was no longer the type of party I enjoyed.  Reading these articles brings greater clarity to the matter.

This article helped me to more clearly see what was going on when I flew by myself last year.  I was shocked that flying from little Abbotsford airport to Calgary airport (where I have flown to and from so much) was difficult.  I had to focus super hard to make sure I was where I needed to be, I had to actively keep myself calm, and it was a taxing experience.  However, I learned from that experience and this year when I flew with my daughter to Calgary again I anticipated that it would probably feel overwhelming.  To mitigate that I ensured we arrived super early (it was quieter at the check-in counter and there was absolutely no stress about running late --- which I’ve never liked, but which completely flusters me now) 
Furthermore, the article highlights these points (emphasis mine!!):
“What can you do? ● Be realistic in your planning – pacing activities to avoid the boom-bust cycle. ● If you don’t achieve an activity try to reschedule it for when you are not fatigued. ● Try not to brood on things you haven’t achieved. Notice when you have done things well and celebrate these achievements. ● Be aware of and acknowledge your feelings and emotions, but try not to dwell on them. ● Plan time in your schedule to do pleasurable activities that will make you feel good about yourself.  Acknowledge that you may not be able to do as much as you did previously.”
And: “ to Limit exposure to avoid sensory overload:
- Avoid crowds and chaotic places where there are a lot of stimuli, like shopping malls.
- Shop in smaller, quieter stores when possible.
- Eat out in restaurants when they are quieter, in between regular meal times.
- Hold conversations in a quiet place.
- Ask people to please speak one at a time. Explain that you’d really like to hear what everyone has to say but you can only hear one person at a time.

-Limit your exposure to noisy stores and loud situations like sporting events, the movie theatre and children’s school activities.”

At the beginning of Kindergarten I thought I would volunteer in Rayna’s classroom/field trips since I was at home full time.  It quickly became apparent that that would not even remotely be feasible.  I now rarely attend any fieldtrip, this article takes away the guilt of this!

The article further suggests “working within your available resources. It is important to plan when to take rest breaks during the day. Resting requires going somewhere quiet and sitting or lying down for a short period. It is better to take breaks often rather than having one long break when fatigue hits you … Relaxation can…help improve energy levels, leaving you feeling refreshed and making you feel more mentally alert, thus making the most of your resources. People with fatigue are advised to take regular breaks.”
Naturally, I try to push through my fatigue (because, quite honestly, resting feels boring) but I am finding much value in incorporating scheduled relaxation and rests.  I realize that running near empty is much less efficient than stopping to fill my tank through out the day (this has been hard to realize since my battery drain is not linear, which is why it’s so important to be aware of when the drain is starting because my battery is like a crappy cellphone battery that goes from 30% right to 0% and shuts down.  So I fatigue easier, but also once fatigued my capacity to manage irritability (I have 3 young kids!) is much worse than it ever was before.
Following brain injury you may need more mental effort to perform a task and you may experience difficulty sustaining this effort over time. Some people have described reaching a point at which their brain ‘shuts off’. When experiencing ‘mental fatigue’ people describe being unable to think clearly and have difficulty concentrating. It may be that cognitive difficulties resulting from your brain injury may be more noticeable when you get fatigued. (YES, this is exactly it) Everyone tends to become forgetful and make more mistakes when they feel tired. Therefore, making best use of your thinking resources through applying strategies may be a way to make fewer mistakes and make things take less effort.”
Like making lists and writing everything down, which I already was fond of doing and post-diagnosis ramped it up.
     Also, this article further recommends meditation.  My counselor recommended meditation to cope          with anxiety.  I find it extremely helpful, which after reading this article makes even more sense!

Finally, its apparent that while I am cognitively intact my surroundings can dramatically limit my ability to perform cognitive tasks.  It is recommended to “do cognitive work when your environment is quiet. Eliminate as many distractions and interruptions as possible.”  On reflection, I realize this is the only type of environment where I can truly do cognitive work, if I want to think clearly on something I deem important I cannot have noise around or busy visual stuff going on in the background.

Reading these articles I see why I feel “like myself” in quiet adult environments when I’ve had adequate sleep.  Conversely I begin to see why my kids exhaust me (more than the average parent).  And after reading this the thought of working as a pharmacist in a big box store (fluorescent lights, visual commotion, a variety of noise: children screaming/crying, overhead pages, a need to be accurate in my work – on a computer screen-- , multi-tasking: determining if prescription is appropriate, checking prescriptions for accuracy, talking to patients, fielding phone calls, answering questions from my assistants, corresponding with physicians, having patients complain because I’m too slow…)  well yikes the answer to if I plan to go back to work soon simply has to be --- there is much more to figure out before that ever happens! 

It feels good, though to have a greater understanding of myself to help make the best choices with my time and energy.  This is very valuable.  I am grateful for this breath in my lungs and, deep breath, acknowledge that I am limited; but, optimistically, in knowing my limitations I am empowered to keep pressing in to living my fullest life!


References:
The Road back to you, by Ian Cron & Suzanne Stabile

https://www.braininjury-explanation.com/consequences/invisible-consequences/overstimulation-floodinghttps://www.braininjury-explanation.com/consequences/invisible-consequences/overstimulation-flooding



Monday, December 3, 2018

Advent Letter 2018


Advent finds me.  She finds me weeping and wondering, broken and whole, hurting and healed all co-mingling in the mystery that is Jesus.
Is this Christmas season far from "Christmas-perfect" for you? Is your journey towards Christmas messy, ugly, difficult, seemingly impossible?  Mine is. If yours is too, I invite to accept the gift that ugly and beautiful are NOT mutually exclusive.  I invite you to accept the gift that in the messy, painful, angry, and impossible, Hope and Joy can still be found and coexist with it all.
It is in the gift of these "co-minglings" that Advent finds me with a Joy that accepts the realities of the day (no matter how rotten they are) but chooses to look with gratitude towards the glimpse s of Hope tucked into each day as i slow down and keep my eyes and ears and hearts open.  
Here is my Advent journey this year.  Not at all concise.  Not at all a pretty gift wrapped up in a perfect bow.  But this Advent journey of mine is rich and good and beautiful.  Come join me:


I entered Advent looking, seeking for more of God’s glory.  On earth as it is in heaven.  Our church’s sermon series is “here comes heaven.”  Bright, shiny, optimistic!  Let’s replace despair with Hope!  These are words I tout from my blog over and over.  These are words I believe whole hearted. They are pretty, and they are perfect, and they are inspiring.

 However, I am realizing that these words have an underbelly that must be addressed.  The hope of Christ is not a perfectly shiny packaged gift with an extravagant perfectly crafted bow. Yes it is a simple (and beautiful) gift to receive (by simply believng): but, the journey of opening it is an arduous one wrought with the challenges of being human.

Advent. 

Being expectant.  A season of waiting.  The “not yet”.  Looking towards the unknown.

I went to an advent retreat yesterday (1).  This retreat highlighted the journeying surrounding advent in the scriptures.  Angels journeying to Mary and Joseph and Zechariah.  Mary journeying to Elizabeth and Jechariah’s place.  Mary and Joseph journeying to Bethlehem.  The journey into the unknown.  The journey of the impossible -  immaculate conception.

As I learn more and more about my personality, I uncover that as a performance driven perfectionist I am not very in tune with my emotions.  I’ve always known that I’m not a terribly emotional woman.  I didn’t realize until recently that I wear this as my armour.  Brene Brown says perfectionism is a 20 ton shield. (2)  It hides the shame and fear.  I am on a journey towards dismantling my shield, to lightening my load.  A journey towards understanding myself better.  Understanding who God has made me to be: gifts, talents, strengths…. weaknesses.  Oh those weaknesses!(3)  It’s a tedious and not so pleasant journey.  It forces me into the ugly that I’ve become proficient in either running from or smoothing over with a perfect, pretty bow of achievement and efficiency.   I don’t like opening up the pretty package and getting my hands in the junk (sh#t) within. 

One station at the Advent retreat was contemplation at the manger crèche: an empty nativity scene.  As I look at the manager crèche, perfection slips away.  I am overcome by the ugliness of it! A stable to give birth in?!!  A manger to place a babe in?!!  Think about this place in detail, allow time for the luster of Christmas “beautification” to fade.  Here is a drafty, stinky building, most certainly filled with live animals and sh#t.   Not the picture perfect place to birth your first child!  This advent season is allowed to be messy because look at this very manager image: it is messy!

As I incredulously contemplate this Jesus whispers to me, “Yes’ Cheryl, I was birthed in “imperfection” to bring perfection.

I recoil, because I like matters to be shiny and perfect.  How do I process, this?

Slowly I begin to see it:  the ugly and the beautiful co-mingle.  This manger scene.  Beautiful and ugly swirled inseparably.

And I begin to think of the cross of crucifiction.  This is a gory scene.  Ugly and gruesome.  Yet, it too is beautiful.

Within me I hear permission, “it is ugly, Cheryl, it’s okay to scream at life’s imperfections! Its okay to scream at life’s unfairness! It’s okay to scream at the downright awfulness of it all!”  It’s okay to scream at my cancer diagnosis and everything that has unraveled.

I see I have not allowed my anger of grief to sing her song yet.  And I see I must do this to keep pressing in, to pressing forward into living.  To keep pressing forward into Hope.

So here it goes:
Journal excerpt Nov. 7/18
The flux between stages of grief is confusing and complex and makes me feel like I don’t have a place.  I dance between denial, bargaining, depression, acceptance, and anger.  Yes anger I will name you.  It’s a funny thing hard to describe.  Hoping and pressing into hope is unsettling when acceptance resurfaces-  acceptance that this is what my life looks like, stage 4 brain cancer diagnosis and prognosis and all and the potential realities.

These questions: What if I only have 3 more years to live? (an arbitrary amount of time that surfaced after reading about a 5 year glioblastoma survivor)  If that’s the case what do I want to prioritize?

And this: I have glimpsed Jesus so intimately, I have touched his cloak and it was magnificent, that fear truly does evaporate because I know within my core that no matter what all will be well.

But: How do I belong in this world when I’ve begun to enjoy “normal” again – running with a dear friend, soccer, doing Christmas: buying gifts, planning, celebrating.   But I am so far from normal.  I look normal and can pretend well that I am normal but underneathe there is always this which is so NOT normal:

DIAGNOSIS.

I feel like an expat not truly at home in my native country (“the non-cancer world”)  but not truly at home in my new country (“the cancer world”).

How do I deal with the dance between enjoying life and being optimistic and being aware of the monster they say lurks in my body?

How do I choose priorities when death could be imminent, but I’m pressing into Hope that it’s not.

These are my struggles

My uncle is dying from MS and this breaks my heart.  His daughter, my cousin, has always been my dear friend.  His youngest grandchild just a babe.  And I rally against God in the too soon of his body failing him. Anger for him.  Anger for me.

Yes it is anger.  I will finally name her for what she is.

The questions: Why? Why me? Oh God why me?
I AM NOT OKAY WITH THIS!
God do you not see my hopes and plans?
God do you not see my love for you?
God do you not see my husband? My children?
Oh God preserve my life.  Oh God give me a long life.

Oh God do you see me?  Do you see me! Do you see me ?!
(the whisper response): I see you.
Please heal me, I whisper back.

So what shall I do in all of this?

What shall I do?

I lean into the words of Katie Davis Majors and I choose to dare to hope. I join with her as she says,

"Maybe courage is trusting when we don't know what is next, leaning into the hard and knowing that it will be hard, but more, God will be near.
Maybe bravery is just looking fear in the face and telling it that it does not win because we have known the Lord here.
Though we tremble and feel uncertain, courage means we press into a God who is certain, sure, steady. He carries us; He lifts our heads. And His unfailing love and comfort become our courage and our hope.
Katie continues, “"It is a brave thing to hope, to continue in hope,..."Chin up, love."(God) whispers. "Hold on to that hope.  Eyes on me dear one. I am not done yet." (4)

Yes, I choose to dare to hope.

(ps.  All this took place on a Sat AM before soccer practice.)
End of  journal excerpt

At my advent retreat I participated in 2 labyrinth exercises.  The handout I was given states “A labyrinth is a tool for prayer whereby a person follows a path in prayerful silence to a centre.  It is a living representation of our life journey from birth to death to new life in God” 




These are 2 images an image of an outdoor labrynith similar to the one I walked on Saturday and an image of a paper labyrinth I began coloring.  These experiences were surprisingly fruitful for me.  First I sat and colored a labyrinth.  It was annoyingly tedious. Then I walked the Labryinth, it was frustratingly tedious as well: just let me get there. Here are my responses to my labyrinth experiences.

As I return to Mary and advent I see an arduous journey demanding courage and hope.  A journey of pressing into the unknown, the waiting though it seems fruition is not coming.  Pressing into the journey while I’m screaming “Enough God. Enough, I’ve had enough!” And God whispering, “press on child.”

the Joy is in the journey,
I am not a God of “efficiency”
Stand at the watchtower and wait

Mary’s arduous advent journey.  Putting words in her mouth to echo my own I hear “a long donkey ride while pregnant?! Are you kidding me?!” and “This is taking freaking forever!!!”

But God replies, “My gift is… forever.” 

---------------------BREATHE------------------------------

And to my performance driven perfectionist self:
Slow down.  Enjoy the journey.  Lengthen your days by being present in them.

Like Mary chose to say, “Yes”, to being Jesus’s mother I say “yes” to being present in the ugly, in the pain, in the unknown, NOT rushing to find certainty (that does not exist); but finding beauty right where I am.

And I see this is what hope and courage mean  ----  not waiting for the rescue in angst, but realizing that the rescue is actually in THIS moment, every moment – God with me –through the ugly, broken, stinky mess that life is.  God with me: good news that brings great joy.  Good news and great joy that exist even when the impossible of life comes around and trys to steal this good news and great joy.  Good news and great joy because nothing is impossible for God. 

I’ve been warring with my diagnosis this past week as I await MRI results.  I sat in church service this morning very much in need of a HUGE dose of hope.  In need of being reminded, passionately reminded, that I have a God who gives hope. Our pastor this morning reawakened the hope I need to keep pressing on in this arduous journey.  He preached that when the angels spoke to Mary “nothing is impossible with God” the angels offer not an announcement; but rather an invitation.  An invitation to say yes, like Mary, to step into the impossible trusting God to make it possible.  An invitation to step into “holy boldness” and courage. Step by step believing that God is bigger than my impossible.  SO much bigger. (5)

This is where advent finds me this year.

To close, an Advent poem voicing the longings of my heart to see cancer destroyed in my body that I may raise my children and more.  Please join me in prayer for the impossible to be realized in my life.  Thank you.

My Holy Assignment: an advent poem
By Cheryl Rostek

My Holy assignment is to love my children
The best I know how.
To open my heart.
Tender
Broken
Loving. Oh so loving.
Wanting to protect these precious babes.  
My gifts.
So pure.
To Hope so boldly
Pressing in to the
Unknown.
Bravely.
With all my guts
Yearning
Praying
Believing
That there is a horizon of
Good
Love
Joy
Peace
Life
In this mysterious (scary)
Journey.
Oh God rain down blessing on this
My holy assignment.


______________
(1) Advent Retreat hosted  by Lorie Martin, loriemartin.com

(2) https://youtu.be/cvhgOr1Mcrk

(3) I watched “A wrinkle in time” with my 6 year old this past week when she was home sick.  I loved this movie.  I read the book years ago and didn’t think too much of it : too much fantasy and stuff that didn’t make sense to me.  As I watched the movie 25 years older I have much appreciation for the fantasy, for the “doesn’t make rational sense.”  In the story Meg is told that her weaknesses is her gift.  I am on the journey of discovering my weaknesses.  I hope that as I unwrap them, that God will grant me the ability to see how my weaknesses can serve me as a gift.  I think Paul’s words in the bible verse 2 Cor 12:9: [God] said, "My grace is all you need. My power works best in weakness." So now I am glad to boast about my weaknesses, so that the power of Christ can work through me.

(4) Daring to Hope, By Katie Davis Majors.

(5) http://www.firstave.org/listen , at time of posting sermon not posted online yet but I’m sure it will be- sermon 1 in series “here comes heaven”

Friday, November 23, 2018

What I learned on my summer vacation: Identity, Motherhood, and Womanhood


Photo Credit: Vicky Falk

(Post written Sept 2018)

Jesus says that in Him, I am enough.  So to the lies that lurk around trying to make me question my value and identity, I say, “ENOUGH!!!”.


I learned so much this summer that I actually created an outline of what I want to share in my blog posts this fall.  This post was to be about the importance of my role of mothering; but as the days press on into Sept and more challenges arise I realize it is so much more than just my role as a mother, it is about the entirety of my identity.  I know that I have written about my struggle with identity this spring; but it keeps coming up.  What I thought I had learned already, I realize will be a lifelong learning journey and already in the past 2 weeks what I thought I had learned morphs into something bigger.

I’ll start at the beginning.

I feel like I’m in the middle of an identity crisis.  I’ve written (see post: Identity from June) about no longer knowing who I am and feeling like even if I get a glimpse of who I am now, I question, is it enough?  The loss of my career struck me hard and deep.  I’ve had trouble letting go (*1); but it’s more than just letting go.  I did not realize how deeply I tied my identity to my career, how it served as a self-created metric of my life-performance and more.  In my journal I wrote this:

“It’s hard to let go of my career, because I do not know who I am without it.  I have been performance and accomplishment driven for my entire life.  Who am I when I just…am?” 

Then here’s the rub,

“Am I lovable, worthy of admiration and affection as I just am?”

After I realized this was the question I fell into my husbands arms weeping, honestly imploring him if he still loved me just as much now that I was no longer a (working, producing, capable) pharmacist.

Of course he does; but I needed to hear it from his lips to be sure.


Thank God for my dear friend Amy, who in her own parallel challenges has become the most kindred and cherished friend.  Amy and I share a driven determination in academics, career, mothering and faith in Jesus.  Though our challenges are different Amy has been a treasured and faithful friend who “gets it” and speaks wisdom into my life.  This summer our brief encounter at the playground as our kids played meant more than I can express.  Following this playdate Amy wrote me these words (printed with permission):

“God knowing intimately all your interests, abilities, education and gifts (which are considerable) has given you the task of loving and raising your family right now.  Trust his wisdom that that is what both they and you need most right now.”

With this affirmation from Amy I pressed into fall with a new sense of my identity.  This is what I wrote in my journal:

“My “job” this fall is to love my family well, to begin cutting through the anxiety(*2) the trauma of my diagnosis created, and to engage wherever I find myself in my neighborhood, my city, in conversations.  Creating spaces to interact with others, to engage in the battles that others are fighting: for their benefit and my own.    

To learn I am still valuable even it I am not “accomplishing”; to live out my very beliefs of valuing life simply because it’s life; and to live out the beauty of life lived generously in relationship (where currency is not money, but rather time and quality, care and emotional involvement that can hurt in a way that gives life.)

THESE are my jobs and they are so worthy a calling!”

This post was supposed to be about my journey to finding the beauty and value of this new call and of mothering.  Certainly, I’ve found myself able to engage more deeply with my kids because I’ve cut away the internal scorn I felt in being “only” mom.  I’ve found deep satisfaction in being present and engaged in their little lives.  I’ve been able to allow these experiences with my children (positive and negative) to warm my soul.  This has been a step forward to embracing my life as it is today and making the most of what today has for me.  And truly this has been beautiful and worth celebrating!  Little moments of delight have begun to feel monumental.  This is where I thought this post would end: re-embracing the importance of mothering.

However a decades-old setback reared her head into my life again: self-esteem crisis.  Honestly, I was rather blind-sided, but awakened, by this emotional crash this week. In the midst of seeking to live optimistically my identity crisis returned as a self-esteem crisis.  This has provided me with “aha!” revelations. 

This all came to a head following a hair-cut.  My hair feels like it’s a really awkward length, I’m so ready for it to be to the next stage, you know, longer.  Well my hair was driving me nuts.  I hadn’t had a haircut for a few months, so I thought “a hair cut will fix how I feel about my appearance!”  My lovely and talented sister-in-law has been cutting my hair since it started growing back post-radiation.  She cut my hair again giving it more style (as I had hoped, you know freshening it up while I grow it out.).  It ended up a bit shorter in the back than I had expected – but with great “shape”.  Really I wish my hair were longer overall, no fault of the haircut, that’s just me wishing my hair to grow faster!  However, my absolutely wonderful husband does not like my haircut.  He bumbles around talking about it, trying not to say the wrong thing and it’s kinda humorous.  Usually I’d be able to say, “So what if he doesn’t like my haircut this time.”  This time I can’t.  I cry in private and I am discouraged.  And I question again, my value, my identity and is it enough?

Really it’s not the haircut, that was simply the precipitating factor; but, this is indeed a real struggle.  I’m sure every woman reading this will nod her head in agreement; we’ve all had self-esteem struggles (*3).  As I wait for my hair to grow and as I wait for my heart to believe what I keep trying to affirm with my head (that I am beautiful, that I am valuable, that I am treasured NO MATTER WHAT) I am reminded of Habakkuk climbing into the watchtower and waiting for God’s response.  Waiting expectantly.  Hair growth takes much time.  I’m starting to get mighty impatient with growing out my hair.  The optimistic, “I’ll make the most of losing my hair to cancer treatments and have fun with my hair as it grows” is getting old.  Here I must be deliberate as Habakkuk was.  I must deliberately, daily climb into my watchtower and wait, patiently but expectantly.  Wait to see how God will respond, how God will show up.  Because show-up he will and I want to be ready!  I have to choose not to be deceived by the lies that are trying to pierce me like arrows, deflating the purpose God has for me.  Though these days it is work to believe I am God’s beautiful creation, I choose to press into this work until my heart again believes.  Life is far from passive.  Each day I choose to hope in God, I choose to believe in the beauty he has created in me and surrounding me, I choose to open my eyes to the blessing surrounding me so I can come to the watchtower expectant.  This is difficult work.  

Circling back to my newfound priority role of mothering I see clearly the importance of this difficult work.  How can I teach my girls their true value if am not working on sorting out my own?  Furthermore, I want to be a voice for my girls; but also for all women.  In showing here my struggle for confidence, for strength I want to be a voice to help men understand the struggles we as women face.  I believe there are many wonderful men who are truly loving, caring, compassionate men (like my husband) who do not understand the “female battle.”  I believe we are doing a disservice to our husbands, especially the fathers of our daughters, if we do not vulnerably share our struggles.  In the same breath I ask husbands to open-mindedly seek to understand your wives.  So as a mother desiring the best for my children, I will share my heart here.

A year or so ago I wrote this (I reference the following image):



Driving to church this image that I saw on Facebook popped into my head. I was on the verge of falling apart; driven by the exhaustion of having 3 sick kids on top of our just barely manageable daily life.  This was too much.  When I first saw this post I thought, " this is poignant truth.". And I was compelled to affirm the one who posted it, to affirm, I've been there, I see you, and you are beautiful, lovely, and treasured.
I take the time today to write out these words because this image needs to be understood.  I have so very many wonderful, emotionally healthy men in my life- topping the list with my husband and my dad.  I am at a tremendous advantage in this regard, and yet I too struggle with elements of these shame-filled thoughts.  My husband is completely baffled and can't even grasp how these emotions of insecurity and shame could even possibly be present in my life.  This is my amazing, supportive, loving, wise husband (God bless him!) who can't capture a sense of what women face.  So I write these words to try to bring light to this struggle. I write not because I am educated in the subject- far from it. I can only write my experience and try to be a leader in giving women courage to voice their stories.  I write this because my brain cancer diagnosis says I will not be there to help my husband navigate with MY girls when preteen, teen, young-adult, adult, motherhood challenges come.
Women have unique struggles.
The world tells us we are not enough- we are not thin enough, we are not beautiful enough.  There is a constant struggle to feel worthwhile.  Girls struggle to feel that they are enough, just because they are.  So to try to bolster themselves girls attack each other. At its worst they cut one another down, bully one another.  At its best they quietly compare, hoping to come out better in some tangible way in order to be validated.
Validation.  A girl, a woman, wants to know that she is loved simply because she is loved.  She wants to be told in words that she is loved, just so she can be certain. Similarly she wants all that is beautiful within her to be affirmed.  She wants to know there is somewhere that she can fall and depend on when these affirmations don't come or worse when she is lied to and told she is ugly and worthless.
This is the war of a teenage girl- to determine if she is allowed to believe she is beautiful, cherished, loved, and worthwhile.
If the young woman claws her way through youth and manages to have a positive view of herself, the struggle still never stops.  Men, this struggle is real and on going.
There is a longing in women's hearts to be treasured through affirmation.  The world shows us unhealthy ways to try to fill these longings, while at the same time creating an illusion of what healthy relationship is.    A loving, devoted relationship and marriage will never be easy nor will it be fairytale-like.
My husband cannot solve all my problems. He cannot be Prince charming who rescues me from all my troubles.  But he can be there supportive, loving, affirming at every part of the road.  I personally am so in love with my husband not because he's the most romantic (in fact, I would say, he struggles with romance) but because of our shared, loving history and commitment- and because I know that no matter what I can find myself in his arms for comfort and companionship.
Girls, remember that you are beautiful because that's how God has made you! You're His daughters!  You are His masterpieces!  You are His delight!
So find that diamond (passions, gifts, talents) He's placed in your heart and soul and polish it so it radiates brilliantly!  What do you love? What are you good at? What makes you feel like you could fly?  Pursue these things- God has given them to you as gifts!
By doing this, you can fight against the shame so many women face.
By doing this you can help other women see their true beauty too.
I understand it will still be a battle.  So arm yourself with truth.  Read God's truth about you.  Know the truth that you are cherished, loved, treasured, beautiful!  If you feel contrary to this truth tell Satan to scram and speak these truths outloud.  
The world may not know what to do with a girl and a woman so confident in who she is.  That's okay because truly this posture is for the world's benefit.
Dads, husbands affirm the girls and women in your life: compliment them, compliment them in front of others, hug them, buy them small gifts, look them in the eyes and say "you are beautiful", do something nice for her without her asking, take her on a date YOU planned for her.  Seek to learn what makes her feel loved and work at showing love to her in ways that are meaningful to her.


Moments that mattered in my life, bringing me to where I am, thoughts from what I’ve learned:
I recall a season when I was maybe 9 or 10, where I would ask my parents regularly if they loved me, even accuse them of not loving me.  I see this now as a call out for affirmation. I choose to write this here since it seems that remembering this marks it's significance.
When I was 13 there was a girl in my class who called me fat everyday.  I was clearly slender and so I brushed her off.  But her mean words were cutting.  And I was absolutely frightened of getting fat; perhaps because of her words or perhaps because of the ideals of society. Whatever the reason, for the next 15 years I found myself with a very unhealthy relationship with food.  I teetered on the cusp of an eating disorder and couldn't imagine how I would ever cope if I were to have a few more pounds on my body than I wanted.  I could not grasp that I was beautiful no matter what shape I was. Nor did I understand that being healthy is not about trying to be thin. Being healthy is about feeding our bodies good wholesome food, treating them well, so they will function optimally.  Being healthy is about balanced exercise, moving our bodies because it's good for both of mind and bodies.  Health is not obsessing about high calorie burn.   Our bodies are beautiful creation that enable us to participate in so many blessings of life.  I have come to a place where I am simply so thankful for this body and what joys it allows me to participate in.  I am ever learning how to fill my body with nutritious food. Why? To help my body function optimally, a positive appearance is simply a by-product of this.  I love physical activity like running and soccer and I am so thankful for what this body has done for me.  I have "ugly" varicose veins, my stomach muscles are so separated and my tummy skin wrinkled and stretched.  But that's because of what my body has done for me!  I still find it phenomenal that this body "grew" 3 children, 2 of them at the same time!!!!  Our bodies are amazing!  I have come to love my body for all it can do for me.  But this was a journey.  Daughters, I hope you can see much earlier in your lives that you are absolutely beautiful, from the inside out. And I hope early on in your lives that you can learn to love your bodies.
You are fearfully and wonderfully made. Don't let the world tell you otherwise.  It will try hard.  Satan, our enemy, knows our weaknesses;  always remember God has overcome the enemy!  When the world tries to lie to you, yell and scream and fight back with the truth!
What else mattered to me?  Having a Dad who made me know I was loved.  He wasn't a man of many words.  He was often worn out himself from health struggles.  But through a few key actions I knew through adolescence how much he loves me:. He would come when I was sitting at the kitchen table and he would affectionately pat my head.  I would shriek because he was messing up my hair.  And Dad would call me"his squirrel".  It probably didn't matter what called me, but in this nickname I felt love.  Finally, when Dad said, "that's my girl!" to me on my wedding day, it held so much weight.  (Thank you!)
Fathers ensure your daughters know, beyond a doubt, that they are yours and you will always have arms for them to run to.
Gentlemen, we need you.  As you come to see our battles as women more clearly, I deeply hope that you can see how your words and actions have such power to either bolster or hinder our pursuits and passions.  Do not take this role lightly.  Love the women in your lives openly, tenderly, compassionately.  (This is the kind of man I long for my son to become).
Thank you Dad, for ensuring I always know I am loved. Thank you Ryan, for loving me deeply, intimately, bravely, fearlessly. 

Lies tell me that I will never be enough.  And I truly will never be enough on my own might; but in God’s mercy I AM enough!  I am enough to make a difference in my family, my children, my neighborhood, my city, my world.  I am enough to bring light into the darkness.  I am enough to speak life into the death that creeps around me!

Women, let’s walk this out hand-in-hand, with increasing vulnerability; not pretending that we’ve got it all figured out.  Let’s voice our aches so they can be heard amongst one another and be soothed.  It can be difficult to find our voices when we don’t feel beautiful.  Acknowledge and release any lies so you can start believing you are beautiful.  This is not easy work; vulnerability is hard, honest work.  It is difficult to talk about stuff before it’s all sorted out and returned to a semblance of being picture perfect again.  But, it is my hope that we can be a womanhood who stands waiting along the watchtower wall banded together hand in hand expectant for good on the horizon.  A womanhood praying hard for the hope we all need.  A womanhood seeing and being seen so we can love richer and deeper and so our worlds can be changed!  This is the confident, empowered and optimistic outlook I want my girls to step foot into.  Therefore, I commit earnestly to blaze a trail for them, by God’s grace, living out an example worthy of following; continuing the trail my ancestors blazed for me.  Join me.  I’m rather certain this will be spectacular.   



  

______________________________________ 
1)     We must keep moving forward.  I realized that I want to cling to the beauty of the past.  A couple weeks ago we were at our close friends’ house reminiscing, looking at photos of the past 9 years, about the fun times we’ve had.  Remembering who we were then and the joy and awesomeness of it.  The sermon the next day was about keeping moving forward.  Our pastor, Pastor Scott spoke about Phillipians 3, essentially, about forgetting the past and pressing forward.  He said, “The old good days can be our greatest hindrance of the new good days.” And I realized I’m trying to cling to what was.  Oh, it was good, but it is not the present.  I need to believe and trust that the present and the future are also ripe with goodness.  As long as I’m looking backwards I will never be able to look ahead and grasp today’s goodness.

2)     Post to come on learning about my anxiety/trauma

3)     I believe men have these struggles too, in a different kind of way that I don’t fully understand, but which are even more “hushed” than women’s